Holding On

The past three weeks has been a whirlwind of a ride with doctors’ appointments and procedures.      Suffice to say, the Lord has really granted me and my Mom a lot of strength as we went through this.  My Mom took me to all my appointments and procedures, as I wasn’t really able to go myself.

First off, let me update you all by sharing with you that some of my cognitive issues (I shared with you a while back) have been getting worse—this isn’t a good thing.  This is why most of the time, my Mom accompanies me on most of my doctors’ appointments, especially these important ones regarding my pain issues and neurological issues and NF issues.   You may wonder what I mean when I say my cognitive issues are getting worse.  Well, a good example might be the following: I can be somewhere and be totally lost and not know where I am or what I’m doing; why I’m there or even what time of day it is (despite looking at my watch).  This usually worsens with increased head pain/pressure. [side note: If I ever look at you in a glazed/confused look, please please, don’t hesitate to ask me if I’m o.k. or ask me if “I’m checked into ‘reality” or something like that.] My neurologist Dr. Leone believes it is not only the pain causing it, but also it has a lot to do with the accumulation of the medication I’m currently on; however, decreasing it now isn’t feasible since many of the medications I’m on is supposed to help control some of the pain and muscles in my head and neck as well as my abdominal pain (which is not going well and will be explained later).

 

Something I didn’t know (call me unknowledgeable in this area if you want to) was that people can experience migraines in the back of their heads.  Apparently, my doctor has diagnosed me with a different form of migraine that very few people have (not sure what it’s called)that the pain presents itself in the back of the head.  I don’t experience sensitivity to light and sound, but I just respond with extreme nausea and vomiting. My pain is substantially increased also due to what is believed to be many little NF tumors.   Because of this, Dr Leone spoke to a Botox neurologist specialist to see if Botox was something worth trying.   Dr. McMahon (another neurologist) said that he felt it was worth a try. So I’m trying this treatment out and my insurance covers it (PRAISE GOD!).     The thing about this treatment is that I have to receive 30 “pokes” at one time—um, yeah, something I don’t really like.    Dr. McMahon told me that one usually doesn’t feel any relief after the first treatment; but after the second treatment, there should be a noticeable relief after a day or so.   If there isn’t a noticeable difference after the second treatment, I am back to the drawing board with Dr Leone to figure out another plan, but chances are, there is little to be done. But, if the Botox treatment works, I will continue with it every three months. Yes, I’m not a big fan of the procedure and what it involves, but what I have to endure for 20 minutes is worth it, if the treatment works (despite my high anxiety).   I’m praying the treatment works; and as far as getting off some of the medications, Dr. Leone told us that it is something to be discussed in the future, but it will take a span of time as well as working with the pain management doctors. 

Pain management doctors—ah, this is going to be a rough topic. Oh, I still love the Augusta Health Pain Management Center so much.  I’ve never been treated with such respect or treated as a PERSON instead of a patient or a “guinea pig”(ok, maybe not a guinea pig, but you get my point, at least I got to see my own doctor and not anyone else).    I had an appointment with Dr Lee the beginning of May and found out he is RETIRING! UGH! He’s way too young, but like he said, he wanted to dedicate the rest of his practice to research on pain control.   His last month is August.   As you can probably guess, I’m not too thrilled about this, but I know I’m being left in good hands.  He has transferred me to a doctor that has left UVA and now practices in Augusta.  Dr. Davis was highly recommended by Dr. Lee.  I was still a bit nervous about switching doctors.  However, when I spoke to my neurologist about this, my neurologist, Dr. Leone, told me that Dr. Davis did some interning with him and assured me that he was a very good and highly qualified doctor, I felt a bit better (both my Mom and I did).   My first appointment with him is in July.  

The pain in my abdominal area continues to be bothersome and extremely painful.  At times, all I can do is just sit on the sofa or lay in bed.   Two weeks ago (May 7), Dr. Lee did a different pain block procedure to see if it could help calm some of my pain nerves down.  It is called an Ilioniguinal nerve block—believe me I was sedated the entire time AND I’ll spare you the details! The first few days, I was very sore from the procedure, but afterword I felt a bit better and I’m feeling the nerve block is helping.   Dr. Lee explained to me that any nerve block procedures only provide a respite period for the pain and doesn’t cure the pain (as I already know); so therefore, they have to be conservative about how many times I receive this type or any type of nerve block.   The reason is that too much of the nerve block medication can damage the nerves and have the opposite effect than desired—we certainly don’t want that!  Right now, I’m feeling “ok” and not in too much pain because the medication is still working… It’s usually flares up when I’m too physical. I’m sure at my first appointment with Dr. Davis in July, we will be discussing next treatment options.  There has been one treatment discussed with Dr. Lee a while back, but it’s very involved and something I rather not think about; it’s a last resort.

So in three weeks, I’ve had three doctor’s appointments, two treatments (well, technically 4 doctor appointments, 3 treatments if you count dentist/dental work which I HATE, because my mouth is so small and opens so little that it hurts to get even simplest dental work done).   You can safely say I’m mentally and physically worn, my anxiety continues to grow with each pain felt.  Yet your love and prayers are felt, friends.   Thank you everyone for your constant love and prayers for me. I continue to see the Love of my Father and His will in my life.  I continue to hold on and press forward for I know that this race is yet to be won.  Please continue to pray for me as I go through these treatments for my migraines; and for wisdom to know what to do next for my abdominal pain.

You are all loved.